An Ode to My Husband/Their Father

My very first date with Mario I had the overwhelming feeling that he'd be a terrific father. That may seem a strange thing to think about on a first date, but it's one of the many things that attracted me to him. Another was the fact that our first date was 8.5 hours long and we never ran out of things to talk about. Anyone who knows me knows I talk a LOT, but to find someone who could volley the conversation ball back and forth with me for that long was impressive and made me think we could grow old together and never run out of things to talk about. 

The fact that he was a Big Brother (remember I was a former Big Sister) and loved kids was icing on the cake. While our romance wasn't always easy in the beginning, I knew he was my partner and we would both work hard to make a good life together if we could learn to compromise. Thankfully we did.

When Abby was born he took to fatherhood so naturally. Even though he'd joked he'd never change diapers, he did and quickly got better at that and swaddling than I ever was. When I had breastfeeding issues at first and baby blues, he was an amazing partner and coach, surprising me with his sensitivity and patience with us both. He could not have been a more loving daddy and husband and I was so very grateful that he was ours.

When Abby was 6 months old I went back to work and he took the second six months off to be with her. As much as it broke my heart to leave her, it was one of the best parenting decisions we've made. Mario was a full partner in childrearing and has always understood how hard, yet how rewarding it is. 

As much as he can be impatient with adults when annoyed, he has incredible patience with our children. From cooking with them to playing with them he manages to make everything fun. Despite his love of fun, he's a disciplinarian and although we've sometimes struggled to find a balance between no and negotiating to arrive at solutions together, our kids are generally kind, smart and mostly well-behaved little humans. I know that there's not a day that goes by that Mario isn't grateful to be their dad.

Mario had a pretty rough childhood himself. When he was 4 he survived a car accident in which his parents and older sister died in Colombia. He came to Canada to live with his mother's sister and her husband in part for our superior medical care since he had burns on his legs and arms and had to have more than a dozen skin grafts over the years of his childhood. He is a survivor and a warrior. And now his son is, too. 

When we learned of Ollie' s diagnosis, Mario was stoic. He was confident that everything was going to be okay and our son would have the best medical attention and get well. No question, no need for hysterics. 

I was confident of this, too, but much less strong and totally unafraid to show the kids my sorrow that we had to deal with this. Since I am an emotional being and cry when I'm happy, sad and mad, the kids took this into stride. 

Although I know the idea of being around hospitals with sick children has always stressed him out (who doesn't get stressed there, but he has more reason to be than most), he's always generally sucked it up to be there the few times that our kids had to go to CHEO over the years. When we discussed who would take a leave of absence from their job to care for Ollie, Mario was willing to do it, but we felt it best that it be me. I knew I wouldn't be able to focus on work when I needed to be with my baby. 

Despite that, Mario has been present and involved every step of the way, thanks in large part to his wonderfully understanding and flexible employer. Naturally, I've spent more time in hospital with Ollie over the last 6 months, but Mario has traded me off many days and nights to give him time with Ollie, me a break from the hospital and for me to have time with our daughter, too.

Navigating the world of cancer while parenting together must be one of the ultimate tests of a relationship. Luckily for us, "We fight as one" (thanks again, Frank) and have never wavered in our common goal of getting Ollie well and supporting our family through what will likely be our greatest challenge. Honestly, I've known of marriages that have collapsed because of a sick child. For us thus far, our mutual admiration has only grown as we see how committed the other is to loving our family through this...as we witness the incredible lengths that the other will go to for our children. Most of the time we agree on the next right steps to take with Ollie and when we don't we've been able to find a compromise we can both live with that won't compromise Ollie' s care.

Mario has said recently to Ollie that he is his best friend. And right now, so isolated from all of his peers because of this unfairness, Ollie needs that. Mario also needs that when it's so hard to explain to those outside how all of this affects you daily. Mario is somehow able to be both friend and parent to Ollie in a way that I have not mastered. It's very touching as before all of this, Ollie often gravitated to my softer way of dealing with him and from time to time found Daddy's sometimes gruff demeanor tricky to decipher. Now he often wants daddy to do things for him (he seems to subconsciously feel that I am the mean mama who makes him fight cancer and do all of the hard things).

So this disease has brought us all closer in so many unusual ways. As a parent of a sick kid you are the parent, nurse, advocate, psychologist, coach, healer, miracle worker, physiotherapist, prison guard and enemy of fun. You have to do so many unimaginable things to get your child to take the medicine, get the pokes, do the exercises and keep going no matter what. 

In a crazy way, I have to thank COVID-19 as it has caused us all to be home together through all of this and allowed Mario to be even more involved in the day to day care of Ollie.

The last few days and especially today have been really hard. Ollie has been really depressed and bugged by everything. He hates his broviac (the central line in his chest) and wants it taken out, refusing to understand that he needs it for his stem cell transplant. He says, "I can't! I'm blind!" to things he's been doing since he went blind almost 3 months ago. He's begging to go home or for us to order a Gabriel's green olive pizza or Suzy Q donuts to be delivered here. Again, he is adamant it's possible to get some here no matter what. We keep telling him if he'd only apply that determination to fighting the cancer instead, we'd beat it in no time! Kind friends have been trying to source pizza and donuts here that are equivalent or even cooking up a plan to somehow get them here. We are grateful that people love him so much that they'd do almost anything to make him smile again.

Today Mario and I spent the afternoon trying to convince Ollie of why he should live when he was adamant he wanted to stop it all. He was mad at us for forcing him to have his line cleaned (I had to hold him so he wouldn't rip out his line while Mario flushed and hepronized). We reminded him of how much he's already overcome and how strong he is and when he doesn't feel strong the three of us (with Abby) will continue to be strong for him. I used to joke that I'd make my children into good people even if it killed me, now I seriously say I'll get him well even if it kills me. Through it all, Mario is there with me - talking, teasing, cajoling, begging, insisting, and even crying to get Ollie through this. 

If that isn't partnership, I don't know what is. I'm not usually one to gush and Mario and I are more likely to tease each other than to publicly admire each other, but I cannot express enough how much I love my husband and am so thankful to have chosen him to be my partner and the father of my children. This is the stuff of real hard life and when you're in the trenches you want to know that your trenchmate has your back in every way.

Despite the challenges of the last few days (Abby's been moody and depressed, missing friends, too), the universe has sent us blessings like the Canadian Blood Services story, connections from other moms who have shared survivor stories (including one in Australia whose son lost vision like Ollie and got it back when the lymphoma was all gone), and an introduction to a young hematology doctor who started a Stem Cell Club to hold stem cell swabbing events on campuses across Canada when he was a first year Med Student and wants to share our story as well to encourage virtual swabbing since they can't hold public events right now. 

Honestly these are all examples of the best of humanity and signs that even when things feel difficult and negative, there is hope. In fact two of the cancer survivors' mamas told me that hope is the most important tool in our toolbox or weapon in our arsenal. So we go into a week of tests to see if the Ceritinib is working, starting with an MRI tomorrow and clinging desperately to our sanity and our hope.